{"id":738,"date":"2020-02-05T18:01:58","date_gmt":"2020-02-05T18:01:58","guid":{"rendered":"http:\/\/www.tuffrey-wijne.com\/?p=738"},"modified":"2020-02-12T12:46:24","modified_gmt":"2020-02-12T12:46:24","slug":"end-of-life-care-planning-and-people-with-learning-disabilities-part-3-a-guide","status":"publish","type":"post","link":"http:\/\/www.tuffrey-wijne.com\/?p=738","title":{"rendered":"End of life care planning and people with learning disabilities (PART 3: a guide)"},"content":{"rendered":"

What does good end of life care planning look like?<\/h3>\n

What should you talk about and when should you talk about it? Big questions. As I have discussed in my previous blogs<\/a>, it\u2019s hard enough for any of us to plan for our time of declining health and dying. Much harder, still, for people with learning disabilities.<\/p>\n

There is a danger that we talk about it at an unhelpful time or in an unhelpful way. This danger is greatest if there is a tick-box approach to \u201cEnd Of Life Care Planning\u201d, where the focus is on completed paperwork rather than on communication \u2013 something the Royal College of Physicians and other national organisations<\/a> have been warning against for years.<\/p>\n

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Nightmare scenario 1<\/em><\/h3>\n

(fictional but based on real life, alas)<\/em><\/p>\n

George, a healthy 28 year old, moves out of the family home and into supported living (a group home) for the first time. He has autism and moderate learning disabilities. In his first week there, the manager sits down with him and his mother and asks them, pen poised, “<\/strong>What are George\u2019s wishes for end of life care? Would he like to die here, or at home, or in a hospice? And would he like to be resuscitated, yes or no?”<\/strong>\u00a0<\/em>The question comes out of the blue. George is terrified. His mother is deeply distressed.<\/p><\/blockquote>\n

But the other danger is that we don\u2019t talk about it at all.<\/p>\n

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Nightmare scenario 2<\/em><\/h3>\n

(also fictional; also based on real life)<\/em><\/p>\n

Fred, an increasingly frail 58 year old with severe learning disabilities, also lives in a group home. He is close to his sisters, who visit often. Over the past year, he has had several chest infections. Each time he recovers, but is weaker and less able to do the things he likes. He can no longer feed himself or walk independently, and his seizures have also increased. His sisters are convinced that he is in considerable pain but the care staff are reluctant to give pain medication, as they feel it makes him drowsy. The care staff want him to maintain his hard-won independence, so they encourage him to keep trying to walk. When Fred goes into hospital with yet another chest infection, the home manager says they cannot have him back until he is better; currently, his physical needs are too great. There is nowhere else to discharge him to, so Fred stays in hospital whilst his sisters try and find a suitable nursing home. He dies in hospital two weeks later, alone and probably terrified. His sisters are deeply distressed but not surprised. His care staff are shocked \u2013 they hadn\u2019t expected Fred to die.<\/p><\/blockquote>\n

So, how should we approach end of life care planning?<\/h3>\n

Let me talk you through my top tips.<\/p>\n

I have to stress that I haven\u2019t tested my tips or asked what families, carers and people with learning disabilities think about them. (If you\u2019d like to do this, I would be delighted!) This blog is based on what I\u2019ve learned from my clinical and research experience, and from reading other people\u2019s stories, guidelines and tips.\u00a0First of all:<\/p>\n

What is end of life care planning?<\/h2>\n

In a nutshell, it is planning ahead for the last year, months or weeks of life<\/em> <\/strong>so that there are as few surprises as possible; everyone is prepared for what might happen; and the care someone gets is based on their values and preferences.<\/p>\n

I\u2019m calling it end of life care planning<\/em><\/strong> because then everyone knows what we\u2019re talking about, but you may also hear the term Advance Care Planning<\/em><\/strong>.<\/em> This is a wider term and includes three things (I\u2019m talking about the UK here \u2013 it might be different if you live elsewhere):<\/p>\n

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  1. What you want to happen.<\/strong> These are statements about the person\u2019s goals of care, and their personal values. It could be about medical treatment (\u201cI want to be fed by tube if I can\u2019t swallow anymore\u201d) or about place of care (\u201cI don\u2019t want to go into hospital\u201d) or about social aspects of care (\u201cI only drink coffee out of my red mug\u201d and \u201cGeorge is my best friend and I want him to visit me\u201d). These can be recorded, or they can just be discussed. They are NOT legally binding \u2013 although any decisions (including best interest decisions) should take them into account.<\/li>\n
  2. What you don\u2019t want to happen. <\/strong>This is also known as Advance Decision to Refuse Treatment (ADRT). <\/em>It is a legally binding statement about specific medical interventions that you don\u2019t want. This is where resuscitation statements come in (e.g. DNACPR<\/em>).<\/li>\n
  3. Who will speak for you. <\/strong>This is also a legal document, appointing a Lasting Power of Attorney (LPA)<\/em>. This is useful for people who have capacity. They can nominate a person to speak on their behalf, once they lose capacity.<\/li>\n<\/ol>\n

    If you want to find out more, there are lots of helpful websites and other resources, e.g. here<\/a> and here.<\/a><\/p>\n

    When should you start discussions about end of life care planning?<\/h2>\n

    Bearing in mind that you want to be prepared for the worst<\/strong> <\/em>even when you are hoping for the best<\/em><\/strong>, there are some specific situations that should trigger discussion. Here\u2019s a list.<\/p>\n